A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for September, 2012

Justin and Avalanna, Mr. and Mrs. Bieber

Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

 

 

 

 

 

 

Broken hearts.

News today of Avalanna’s passing is heartbreaking. This beautiful little girl has captured the hearts of millions of people who have come to know her as “Justin Bieber’s wife.”

This morning,

RIP Avalanna is trending on Twitter.

https://twitter.com/i/#!/search/?q=%22RIP+Avalanna%22&src=tren

Avalanna’s Story from Stand Up To Cancer

http://www.youtube.com/watch?v=mYRaPMcyL_g

Avalanna’s bravery, her exuberant personality, and her sheer loveable-ness needs to become a part of all of us. We, as adults in this complex society, tend to focus on the little daily things that pester and annoy us. When we look into the face of Avalanna, when we hear about all that she has dealt with, when we feel the pure, sparkling love spilling from her into our lives, we realize our focus is not where it needs to be. We realize we have a responsibility to respond.

Our response needs to be love for all children fighting cancer.

What joy Avalanna must have received from all of Justin’s love and attention! This really, really touches me. I will never forget what it meant to me to have love and support from someone I looked up to during my cancer treatments—Patricia Barker.

From Grace: A Child’s Intimate Journey Through Cancer and Recovery:

My hands began to shake, and my eyes became two glaciers, melting and forming rivers upon my cheeks.

 Patricia Barker . . . oh my gosh. I had watched her farewell performance at the Pacific Northwest Ballet in Seattle the previous June, in celebration of my thirteenth birthday. She inspired me. Her fluidity, musicality, and strength left me in awe. I was stunned by her grace . . . inside and out. Gasping for breath, I looked to Mom. I remained speechless. There were no words, truly, no words. Soaking up the beautiful moment, I realized that cancer had created it. Well, not cancer itself, but me having it. It was these times that I saw the other side of cancer. I knew I would not be standing there—my body numb, my eyes gushing, and that letter in my hands—if not for it. Cancer is battle after battle, struggle after struggle. And then, something beautiful happens that keeps you going.

 Venturing back into the package, my hand met something hard. The object was not in view, but I knew, from the feel and shape, exactly what it was. The only thing was . . . I didn’t believe it. My mind wouldn’t let me. Delicately pulling the precious gift from its royal sheath, a flash flood occurred in my eyeballs.

It was pointe shoes . . . her pointe shoes.

 To Melinda” was visible on the tip of one shoe.

A gold ribbon tied the two slippers together, creating an almost angelic presentation.

 Oh my gosh. My heart pounded. I could not believe what was happening to me. After suffering so much, I almost felt it was too good to be true, like I didn’t deserve it or anything. My mouth hung open, my breathing was awkward, and my face was hot and red from crying. I lost it—completely lost it. Burying my head in my arms, I cried so hard that it hurt. Never had anything touched me in such a way. To hear encouragement to keep fighting from someone who I admired was breathtakingly unimaginable.

 Her letter was filled with wisdom, hope, and an understanding of what it is like to have a hindrance affect the dance in your life. She also told me that when I beat cancer, I would dance again with a new love and passion. Her certainty made me believe her and gave me a ray of light in the view of my future.

 She concluded by saying, “I will look for you on the big stage of life.”

 Ms. Barker, your words are eloquent, and they’ve had a huge impact on my life. What you did for me will forever remain in my heart.

 I believe Avalanna has taken all of Justin’s love straight to heaven with her. What a beautiful, heart-wrenching, uplifting, and inspiring story of love! My prayer is that this Love Story will inspire many others to open their hearts and give everything inside it away.

 Justin, please don’t stop. You may be young, but your actions show mature compassion and strong leadership. Please keep leading with love.

 Avalanna…

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Can You Feel the Heartbeat?

Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

“Lane’s night has been a lot better than his morning. He has actually ate some food. God please hear the Prayers across the World for a Miracle for our sweet boy!”

 

 

Today, on launch day for The Truth 365 Childhood Cancer Documentary, I bring you The Heartbeat of Childhood Cancer. Today, Lane Goodwin continues fighting as Thumbs up For Lane grows beyond everyone’s expectations. While I absolutely love hearing of all the communities and celebrities who are joining the army of support for Lane, I can’t help remembering the children who are fighting and dying in silence… without worldly support. I send my love and Thumbs Up For Lane on this day, along with love for all other childhood cancer heroes.

http://now.msn.com/cancer-patients-facebook-page-surpasses-100000-likes

http://www.14news.com/story/19610403/community-gathers-in-support-of-lane-goodwin
 https://www.facebook.com/PrayersforLaneGoodwin

 The words, thoughts, and feelings from families of our heroes capture The Heartbeat of Childhood Cancer…

 Prayers for Will
‎”3:00 am this morning our beautiful boy passed away after the bravest, most courageous battle with brain cancer. Our ‘Iron’ Will exemplified an unbelievable ‘Will’ power that left our family humbled and inspired. Yesterday morning his breathing was so shallow he was unable to get the words out but even so would mouth the words from time to time he loved us. Several times throughout the day, evening and night our family gathered around him to be with him as his heart would beat so faintly and his breaths so shallow we knew it was his time. After a few minutes of hearing our voices his heart would pump and his breathing would increase and he would rally the fight again. By early morning our nurse who has cared for so many patients in their last hour was completely baffled and said she had never seen anyone as strong, brave and courageous as Will fight such a battle and be so concerned to the end of worrying about his family. He didn’t want to leave us. After watching him suffer we were praying for him to go on his journey. Tears flowed down his precious face as breaths and heartbeats faded away….and then peace. His eyes opened and you could see him looking for a time…and then he was gone. Our family gathered around him and Jake prayed that Heavenly Father would be there to greet him and comfort him as he left his earthly family behind, how thankful we were for the privilege of knowing and having this precious boy in our lives and the examples he set for us. It was a spiritual experience our family shall cherish. This afternoon Allen and I will start making arrangements and we will update you. We still have much to share, our hope is you will continue to travel with us on this journey and embrace the legacy of our Iron Will. God Bless. Keep the Faith and never like Will let life defeat you. Enjoy the Journey. Trena and Family.”
 Support for Rylie
“My daughter was diagnosed with ALL this past April. My husband is a Navy pilot and was deployed on the USS Abe Lincoln in the Persian Gulf at the time. He was flown home immediately and we were reunited at the hospital. A few later we were amazed to learn that his squadron painted my daughter’s name on his jet along with a ribbon bearing her name. All the pilots also added the orange ribbon with her name to their flight helmets. Throughout the duration of their deployment the jet with Rylie’s name flew combat missions in Afghanistan”
 “So results are in. We learned that (her) cancer is small cell, and harder to treat. We learned that there are other cancers that share the same cells. We also learned that there simply are no more treatment options. We learned that to exhaust all standard treatment, surgery options, radiation treatments, and oh maybe 8 Or so (lost count) trials takes close to three quarters of a decade. We learned that our fears are now what we know. I still pray every day for that one researcher in a lab somewhere to holler “EUREKA!!!, WE FOUND THE CURE!!!” I hold that hope, gripping it tight, knowing all the while that funding is dismal at best, and osteosarcoma is an orphan cancer. That one tiny beam of hope is why I am able to get out of bed every morning, and I won’t let it go. Telling me to stay positive won’t make me un-know what I wish I didn’t know. It’s crazy, Im crazy, and it all sucks. If I ever hit the lottery,,, well, maybe somebody else’s daughter would have a fighting chance. Even if a miracle happened today, (she) has permanent damage to her bones, spine, organs… I have just been so heartbroken. That little beam of hope that shines on me like a flicker of sunlight through a storm cloud sure has a big job to do. Peace and love, (  ) Mom”

Can you feel it?

This is the Heartbeat of Childhood Cancer.

Go Gold Childhood Cancer Awareness

 

Opportunity to take Action from PAC2:

People Against Childhood Cancer (PAC2) via Van Andel Institute
“It takes action to fight childhood cancer. Researchers research. Doctors doctor and nurses nurse. Advocates advocate. And the parents and kids….well, you know what they do. 

Today we ask PAC2 Facebook members to take action to raise $10,000 to fight childhood cancer. No cost except two minutes of your time.

Dell Services will donate up to $30k to our friends at the Van Andel Institute for every view of the video link below. So far they’ve raised $20k. 

If each and every PAC2 member watches you will have raised $10,000 to fight childhood cancer.”

 

Pediatric Cancer Research Revolution

Grace: A Child’s Intimate Journey Through Cancer and Recovery

I bring you updates on Lane Goodwin today. From Lane’s mom:

 Prayers for Lane Goodwin

“Oh My heart is smiling! I got to see my sweet boy walk! He demanded to go to the bathroom so we picked him up & took him in the wheel chair. He then demanded to walk & did with assistance on 2 occasions!! He says he is in no pain & is currently only on seizure & anti-nausea meds. I noticed him just starring at the ceiling. I asked what he was doing & he said “God is showing me my past.” We continue to pray for a miracle & also continue to reassure him if God says it’s time to go home that it’s ok to go. We are completely in shock about how many people are praying, loving & following our sweet boy’s journey. Thumbs up for Lane is absolutely unbelievable!! We told Lane about all the people, professional athletes, news channels, schools, celebrity’s, radio stations across the country that are posting Thumbs up pictures & he smiled the biggest smile 🙂 Thank you to everyone for loving our family!”
 Lane’s spirit has touched many people– so many that Thumbs Up for Lane is becoming big news!

Story on MSNBC

http://www.msnbc.msn.com/id/49105190/ns/local_news-louisville_ky/t/viral-campaign-gives-boy-fighting-cancer-thumbs/#.UFutAY2uaSo
 The unimaginable hardship and gut-wrenching pain that these families endure has to stop. Our world lost a beautiful soul to childhood cancer recently, in Taylor Filorimo. “Pray for Tay” was the motto while she fought so bravely. Tay’s mom, Maria, continues the fight against childhood cancer with a new motto, “Live for Tay.”

 Maria Coleman Filorimo, Tay’s mom:

 “I promised you “My Voice” will never Go Away. YOUR GOLD Project will be known by All, We will bring Awareness, I LOVE YOU.”

 “It’s not just Riverdale.” Tay, “You are the destiny of change.”

 http://www.dnj.com/videonetwork/1828225843001/Maria-Filorimo-talks-about-her-daughter?fb_action_ids=4321123873658&fb_action_types=og.recommends&fb_ref=videoplayer&fb_source=aggregation&fb_aggregation_id=246965925417366

My friends at Alex’s Lemonade Stand Foundation asked me to share this link for childhood cancer patients. This is a very helpful tool—please check it out!

From Alex’s Lemonade Stand

 https://www.childhoodcancerjournal.com/

 I also want to share this link from Alex’s Lemonade Stand Foundation about the recent Childhood Cancer Symposium in Washington, D.C.

 News from the Childhood Cancer Symposium Via Alex’s Lemonade Stand Foundation

 http://www.alexslemonade.org/campaign/symposium-childhood-cancer/2012-resources

 One more bit of great news from Alex’s Lemonade Stand Foundation by way of PAC2:

“Our annual kudos to our friends at Alex’s Lemonade Stand Foundation for another round of Bridge & Springboard Grants. Bridge Grants are intended to keep scientist’s projects on track while they reapply for NIH funding to ensure novel childhood cancer research projects are not compromised. Springboard Grants are in response to cut-backs in NIH funding of new applications. The Springboard Grant is designed to jump-start new projects with high impact potential for childhood cancer research while other funding is sought.”

 http://www.alexslemonade.org/grants/bridge-grants

 While I am sharing, this WONDERFUL photo came to me via Twitter:

AnnaBell

pic.twitter.com/8EMXrBN

Dear God, I don’t want to puke.   Love, Bree

 Finally, I would like to share this…

The Truth 365 Day 7 Preview Laura Thrall President and CEO CureSearch

http://www.youtube.com/watch?v=rXil2qnMFkM&feature=youtu.be

Did I hear Laura Thrall say, “We are not competing?”

“We are not in competition, we are in cooperation.”

https://gracemelinda.com/2012/09/18/were-not-in-competition-were-in-co-operation/

(Is there an echo in here???!)

Aggregating for Efficiency…

I will call this the

Pediatric Cancer Research Revolution

September Childhood Cancer Awareness Month

The Extinction of Childhood Cancer

Grace: A Child’s Intimate Journey Through Cancer and Recovery

“We will do everything we can to keep that bully away.”

~Father of a child with cancer   

from

The Truth 365               

Visual images are powerful. Sometimes, it is true that a picture says a thousand words. In order for us (I am talking about serious advocates for children with cancer) to progress to the next level of creating awareness in our society that will begin to truly save lives, we need togetherness, and we need a tool. These are two of my favorite things about The Truth 365 Documentary project. With the images that have been carefully taken and placed together, with many childhood cancer organization, hospitals, and doctors coming together, we have an opportunity before us to take a leap up that huge plateau that stands in the way of cures for childhood cancer. When people of the same interest and same passionate hearts join together, change can happen. We will “Keep That Bully Away!”

 “What change would you like to see happen, Melinda,” you say?

 Earlier Detection

80% of children who are diagnosed with cancer are diagnosed at advanced stages. This figure compare to 20% in adults.

Develop Less Toxic Treatments

Two thirds of children who survive childhood cancer have life-long effects from the treatment that helped save their life.

Seattle Children’s Hospital on my Make-A-Wish Hope Tour

These changes are only the tip of the iceberg. I want to be able to educate people– that 80% could be your child, or your grandchild, or your brother, or your sister. If people know the signs and symptoms of childhood cancer, then maybe that 80% can drop dramatically. We can then detect childhood cancer sooner, have fewer missed diagnoses, and save more children’s lives.

I received an email today from a teacher who has been sharing The Truth 365 videos with her middle school class. They recently lost a beautiful girl from their town. Brielle battled cancer for many years, and the entire community gathered around to support her. This teacher wants to make a difference for Brielle, who obviously touched the town with her spirit. What a beautiful way to remember her, by helping others. The more we learn, the more we can protect our children, and the more we can become the compassionate, caring human beings we were placed here to be.

One of the best things we can do for Childhood Cancer Awareness Month (which is every month of the year for me—not just September!!) is to learn more about it ourselves and help others learn.

Please share, please get involved.

Are you a teacher? You just may save a child’s life by sharing.

Finally, I want to thank Professor Kristen Coppola from Monmouth University for becoming the first University to support The Truth 365…

And to Pepperdine University for being the second! I love Pepperdine! I love each one of you who goes the extra mile to help by sharing. It will make a difference for suffering children who have no voice. What better use of our time and our lives?

The Truth 365 Day 6 Preview

http://www.youtube.com/watch?v=fuZ3tIY7GIA&feature=share

 I am checking to see if you have signed the petition—not scary—very quick—help the kids—you have the time!

 http://www.thetruth365.org/petition/

I love my calendar from St. Luke’s Mountain Tumor Institute in Boise:)

“I want to help be on the forefront of making childhood cancer extinct.”

~Melinda Marchiano

From The Truth 365 Day 6 Preview

 

“We’re Not in Competition, We’re in Cooperation

Grace: A Child’s Intimate Journey Through Cancer and Recovery

“Tell them to bring out the big guns because I’m not going down without a fight.”

~Lane Goodwin

“March 4, 2010 @ 10yrs old Lane was Dx with Alveolar Rhabdomyosarcoma stage IV. He relapsed July 22, 2011 & May 8, 2012.”

This courageous young man has been on my mind, and he is so much in my heart.

When we boil the Childhood Cancer World down to its very essence, this is the nucleus– the reason why we do what we do. The children. Lane.

Pastor Rob at Church for Life begins each Sunday morning by asking the congregation to pray for others throughout the city, including other churches. He continues by saying, “We are not in competition, we aaaaaaaaaaaaaaare…”

Everyone replies, “… in cooperation.”

I see how this can apply to all of the childhood cancer organizations. We are all on the same team. A victory for one organization is a victory for all—because our end goal is the same—ending the suffering of children with cancer. We need to lift up and support each other. We need to act out of love for the children, and not out of pride for building the “biggest and best” organization.

We need to all be In Cooperation… for the kids.

Acting in cooperation, we can raise the funds we desperately need for research that will develop less toxic treatments for children with cancer. 

Quotes from the World of Childhood Cancer

“I remember once in the hospital when ( ) was 3, she wet the bed from all the IV fluid she was getting. Within seconds, nurses came running in all with gowns, gloves etc…all panic….saying we should not touch it….asking me to wash ( ) down (which she hated)…..and all I could think was we are pouring this awful chemo in to her veins but we can’t touch her pee.”
 
“Some parents held their children today for the last time as their life slipped away. Some parents are rubbing their children’s backs as they vomit up the only french fry they ate today because they are being given toxic poison to try to save their lives. Some parents are living in fear that the cancer could return tomorrow, or the next day, or the next. Some parents are watching their child play and smile, while they are holding back their tears knowing their is a monster growing inside of them trying to take their spirit away.”

Your Voice is Our Cure– Thank you to contributor!

Symposium

Pediatric Cancer in the 21st Century:

Harnessing Science to Improve Outcomes

http://www.washacadsci.org/

The Washington Academy of Sciences (WAS) and American Association for the Advancement of Science (AAAS)

 Friday, October 19, 2012

2 -4 PM with a reception to follow

AAAS Auditorium

1200 New York Avenue NW

Washington, DC 20005

Children’s Hospital Los Angeles Nautica Malibu Triathalon

 

 

Hunter

Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

“My humanity is bound up in yours, for we can only be human together.”

~Archbishop Desmond Tutu

 

Yesterday, I wrote about families who have suffered the greatest of losses who turn their grief into hope for kids of the future. Great loss and great suffering can serve as powerful motivators for good. The enormous challenge for those of us who work to raise awareness for childhood cancer is the delicacy of the task. If we pound people with horrible images of The Truth, (even though it is The Truth,) no one will look, and no one will learn. But if we combine those images of The Truth in a wise and compassionate way, like Mike Gillette has done for Day 3 Preview of The Truth 365, we can reach out to the humanity we are “bound up” with. I have HOPE that humanity will listen with delicate, sympathetic hearts, and engaged and active minds.

Yes, I would like all of humanity to become engaged in the mission of ending childhood cancer. Please don’t look at me with those crinkly eyebrows. It is not too much to ask all of humanity to care about these kids. 

The Truth 365 Healing Hunter Foundationhank you, Lenore and Zen, for sharing your gift of Hunter with the world.  (HealingHunterFoundation)

The Truth 365 Day 3 Preview

http://www.youtube.com/watch?v=DudMv3_Brxk&feature=youtu.be

Lenore Davis, Hunter’s mom wrote beautiful thoughts from her heart on The Truth 365 Facebook page today…

“Woke up this morning with very puffy eyes. Didn’t realize Zen and I were going to see our lives flash in front us last night before we went to bed. It was almost as if a sweet lil’ piece of us died all over again. 

Watching the amazing tribute that TheTruth365 pieced together for Hunter was extremely touching and very heartwarming. We were not expecting to see so many deeply felt images of Hunter’s adorable face get placed to a song that seemed so appropriate. After viewing it, both of our faces laid in tear soaked pillows. Still in disbelief of what happened to our lil’ love. Zen reached over and held my hand, and as soon as a piece of his warm, loving body touched mine…I held on for dear life. Such a connection to Hunter I feel through him. Our pain coincides and our broken hearts collide in a way that I feel will bond us together forever, and keep Hunter sweetly by our sides. 

Thank you once again, Mike and TheTruth365, for honoring our precious Hunter amongst so many other special lil’ souls…those that have turned into golden angels and those that are still fighting. Zen and I are truly honored to be standing with you and feel ever so grateful to be contributing to this cause. These magnificent children are being heard and their words and their stories are tenderly piercing the hearts of thousands of individuals who can, and will, make a tremendous impact. 

Much love, strength and peace and many, many blessings to all of the families out there whose lives have been touched by childhood cancer. Lenore, Zen and Angel Hunter Zen”

Hunter…

Let our love for your beautiful face and your sweetest of spirits, guide us and strengthen us on the road to a cure.

Skipping and Squealing with Squeaky Shoes On

Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

 

“Snowflakes are one of nature’s most fragile things, but just look at what they can do when they stick together.”

Unknown 

 

 

Something that never ceases to amaze me, with the more I learn about the children and families affected directly by childhood cancer, is the sheer multitude of them who become passionately involved in ending the suffering of children with cancer. This alone speaks volumes. My heart breaks for the families who no longer have their child by their sides. And here they are, fighting for our kids of the future… making sure that no child has to face what their child faced.

If people could see how hard they are working, or even feel a glimpse of their pain and loss, all of humanity would step up as an enormous support system to help them in their mission– and to honor and recognize the bravery of their childhood cancer heroes. 

At the very top of our “To Do List,” as a World, Country, and as People, is to help fight for the children who have no voice. Children fighting cancer are too busy fighting to have a voice, and too young to articulate their needs to the adult world. Somehow, these kids make the world brighter, even though their own world is falling apart. I want to recognize them and honor them. I saw a little girl and boy skipping and squealing through a store with their Squeaky Shoes on, and I thought…

“That’s what I want for all kids.” 

If you want this for all kids, there are many things you can do to help get rid of the Childhood Cancer Monster. 

Alexa Nawrocki 

My mom and I had the honor and great pleasure of meeting Joann Nawrocki of Alexa’s Foundation during the Hope Tour of Summer 2011. Alexa lost her battle to cancer, but Joann has worked tirelessly to bring Alexa’s love and light to other children fighting cancer. We love you Alexa! We love you Joann!

Joann Nawrocki
Alexa Nawrocki Pediatric Cancer Foundation

Someone else Mom and I had the honor of meeting during that time is Ali McDonough, and her father, Joe. Please vote for Ali McDonough B+ Foundation. She is up for an award, and she really, really has earned it. After the loss of her brother, Andrew, she has turned her loss into hope for children with cancer. Thank you Ali!

http://www.nascar.com/promos/bettyjanefrance/vote/thank_you.html

Please take a moment to vote for Ali– B+Foundation!

Another way you can support these families and honor the children…

The Isaiah Alonso Foundation Chase Community Giving and Ethan Jostad Foundation

(You can vote for two! Just a moment of your time!)

https://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=ein|38-3818833

https://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=location|/charity/view/ein/45-3049472

If you have not seen them yet, here are the first two previews for The Truth 365

Day one Preview of TheTruth 365

http://www.youtube.com/watch?v=URnulziqMNA&feature=plcp

The Truth 365 Day 2 Preview Campaign

http://www.youtube.com/watch?v=djGaTAlfrXE&feature=youtu.be

This includes The Truth 365 Interview with Talia… before she knew her dream to meet Ellen would come true!

One more thing I want to share with you today is the inspiring story of childhood cancer survivor, Sabrina Cannella.

http://www.yorkregion.com/news/article/1502520–people-we-love-sabrina-cannella#.UFO__k_ooO8.mailto

I am in awe of what families and survivors are doing for our kids of the future. I imagine what can happen with the support of our communities, businesses, and government. I know there can be a day when all kids can skip and squeal, with their greatest care at that moment being that their shoes light up and squeak.

 

 

 

 

 

 

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